Cystic fibrosis

Bookmark Discussion

mamanes wrote:

At our ultrasound today, they saw something light up in the bowel that might indicate the baby has cystic fibrosis. Does anyone know anybody who has cystic fibrosis? I’m so scared for my little girl but it doesn’t make me love her any less!

One of my friends in high school had it. Some cases are more severe than others. She ended up passing away before I graduated. There are many ways of treating it. Usually both partners need to be a carrier. I’m a carrier.. I think you and your boyfriend or husband should get tested and go from there. It will be okay mama!

They thought my daughter had it when she was about 4 months old. She wasn’t gaining weight and some of the other symptoms. Neither my husband or I have done genetic testing before. It was a very stressful time in our lives but her tests came back negative for CF. Had the test been positive we would have dealt with it obviously. At least if you know now, you can prepare yourself and do your research. Wishing you all the best!

I was tested today and my husband will go tomorrow then we’ll wait it out for the week until the results come back. We’ll have a specialist do an ultrasound if we both come back positive. I’m so sorry to hear about the girl in your high school that’s so sad.

My best friend has a daughter with CF. They adjusted their entire lifestyle in order to accommodate their daughter and make sure she can be as healthy as possible. She had a rough start (5.5 weeks premature, obstructed bowels, bowel surgery, weight loss) but after over coming all of that she is now a very happy and healthy 2 year old. I swear she’s healthier than my kids. You’d never know she has CF.

she became a stay at home mom. Any kind of respiratory infection can become very serious very fast for any person with CF. Because of this daycare was not an option they ever considered. They switched to a chemical free household and use natural alternatives. Organic and GMO free household as well. Most of the immune system is in the gut. Good gut health equals a stronger immune system, and with her bowels being shortened (from the surgery) it’s especially important for their daughter. Her CF is on the more mild side, but it can easily become more serious at any time.

My cousin just turned 30. She was born with CF. When she was a newborn they told her mother the life expectancy was 8 years old.

They have come so far in the last 20 years! She still takes a ton of vitamins and supplements before and after meals to help break up the mucus in her chest. She has a special vibrating vest for when the mucus build up gets bad.

She can’t be around smokers, obviously, and has a tough time in humid, and hot conditions.

She says the hardest part is that she looks healthy, so her peers and employers have a hard time understanding that she’s actually sick and sometimes needs to stay home or back out of plans.

Put she’s active, social, and healthy as long as she makes sure to put her health first.

I also had an echgenic bowel and was told to get tested for cf. I tested negative for cf because only the most common cf mutations are tested and there are over 2000 cf mutations. Long story short we found out my son had Cystic Fibrosis a month after he was born. If your child ends up having Cystic Fibrosis just know it’s not a death sentence anymore. Your child will be able to live a full life. There are great medications coming out there. In the next few years there will be even more medications that will halt the progression of cf that are currently in phase 3 now. Our son is 14 months and functions just like a normal child and is thriving. We often forget he has cf. The only thing he does differently is that he wears an Airway Clearance vest for 30 minutes a day.

Yes I’ve been reading about the advancements in treatment. It sounds like your son’s CF isn’t too severe so that is great news. Thank you for letting me know that even though your test came back negative, your son still has CF (trying to mentally prepare myself appropriately and realistically for the results). Did you ever end up getting another ultrasound done by a specialist? This is what my doctor recommended.

Yes, I did have to get a few more ultra sounds. They just want to check the growth during the ultra sounds. The specialists are not very knowledgeable about Cystic Fibrosis. The specialist told me since my baby was growing he wouldn’t have cf, but he does. My son is actually supposed to have a severe form of Cystic Fibrosis. There are six classes of mutations and class six is the least severe. My son has a class 1 and a class 2 mutation which are the most severe and is still atypical so I guess every case is different. If he stays atypical until the drug comes out in 3 years, there is a great chance he may stay atypical.